Home

We're home. Jordan was very excited. All he had done at the hospital was sit in the wagon and stand briefly holding onto the chair, but when he got home he was determined to get back to his crazy self and wanted to climb and get into things. He was frustrated when he realized how difficult it was since he is so weak. Everyone was very joyous and it was extremely chaotic as a whole carload of stuff was unloaded and dumped downstairs. Next came the 8 boxes of medical supplies and when I realized Jordan wanted to move around and Brent couldn't lift him very well, I was completely overwhelmed. Just getting all his medical supplies set up took me a couple hours. We are extremely glad to be home and hoping things will get easier as we get in the swing of things and Brent gets back to himself. This Christmas we are so thankful for our family and friends. I don't know what we'd do without you. No words can express how much your love and selfless care for us has meant. We are forever grateful.

Sunday

We are still here at Children's. It seems to go on and on. Jordan is getting better, but has had so many issues they are being very cautious about releasing him. I'm not getting too excited about leaving tomorrow, but it is a possibility. Brent is recovering well. He is stubborn about taking pain medicine and is hobbling along a little. We were quite a sight strolling through the halls, Jordan in the wagon with all his tubes and lines and Brent being pushed in the wheelchair. Someone said you should take a picture to remember this holiday season. I won't need a picture to remember and I think I'd rather forget. Thanks to all who have visited called and sent your good wishes. The stuffed animal count is up to 24 for just this hospital stay ( that includes 10 elmos that sit at the end of the bed)

Surgery

The surgery went fine and Brent is feeling much better. He has to stay the night at the hospital and should get to come home tomorrow.

Please Pray

Brent went into Northwest Hospital this morning with stomach cramping. They did a CT scan and found that he has appendicitis. He is having surgery this afternoon. I'm not sure even what to say except for to please pray for him. Jordan is doing better. He will probably be discharged on Monday.

3 Out

The goal has been met and exceeded. 3 tubes have been removed, two to go, and we'll go home with three. Still not sure when we will be out, but we're getting closer.

Wanting Out

Jordan continues to feel better, but we still have to be here. I want to go home so bad I can barely stand it, but we are dealing with 8 tubes and 3 antibiotics as well as geting his system used to tube feeds again. Everytime one of the six medical teams (urology, surgery, oncology, pain service, interventional radiology and infectious disease) comes to see us I bombard them with questions about tubes,fluid levels, days on antibiotics, etc. I am on a mission to get at least one tube removed in the next 24 hours. I am afraid when we do go home, it is going to require full time nursing care from me, for which I think I deserve some sort of degree. Anyways, we're here just hanging out.

Please pray for Jordan's cousin Ben who arrives today for the surgery to remove his tumor. He should be just down the hall from us on the surgery floor.

Feeling a Little Better

Jordan is doing better. He still has a ways to go but it is good to see him smile again.

No Fevers

No fevers for 12 hours so we are hopeful we are heading in the right direction

Saturday evening

Jordan just got back to his room after more surgical procedures to remove infected fluid buildup in his body. Two new tubes were added and one was removed. I don't really know much about this guantlet of medical procedures Jordan has endured, but I do know Jesus. Honestly, turning over our little guy to the expertise and wisdom of different doctors has been a difficult thing for me; especially when I don't know them or their various qualifications. Knowing that the Great Physician is ever present and always in the operating room has been a resolving and reassuring thought. We are praisworthy that the likely source of fevers has been discovered and now taken care of (we will have more certainty in the next day or so as fevers decrease). Additionally, we are grateful for so many hospital workers lovingly and diligently caring for Jordan. Please continue to pray for God's healing power to rest over Jordan this evening and for evermore.

CT Results

They did a CT scan this evening and have found the likely reason for the fevers; there is an abcess in the pelvic area from the the second surgery. It means another procedure tomorrow under anesthetic and another tube, but at this point we are anxious to get it done and have the fevers be gone. This has got to be the end.

Things I Will Never Take for Granted

Watching my daughter's musical theatre performance, going to the kids' school Christmas party, chasing Jordan around, pulling him out of the dishwasher, sleeping in my bed, sleep, a sweet little blond head of hair, going to church as a family, putting up the Christmas tree, a tubeless tummy, a regular bath, going out with my husband, good news, and a day without fear.

It has been a very, very difficult 2 1/2 weeks. It is starting to feel like we are never going home.

fevers persisting

We believe we will be able to see God's answer to prayer soon, but in the inbetween Jordan's fevers have continued. Though a another surgical procedure was done yesterday, in an attempt to drain fluid and reduce his persistant fevers, those fevers have not gone away and the doctors remain baffled. Jordan's heart rate has also remained high. We are grateful to God for the great news concerning his clear/clean "margins" and we know He will respond to this present need for healing.
Jesus said: "Abide in Me" John 15:4

Negative Margins

We were very happy to hear today that the pathology reports showed all negative margins. It is very bittersweet news as much has been sacraficed. We are moving forward and desperately anticipating the day we can say it is the End of the End. Jordan's fevers continue and they found some fluid near his liver in an ultrasound today. They think it could be the source of the fevers and will be placing a drain this afternoon. It is another unpleasant procedure for Jordan but will hopefully put an end to the fevers and any infection going on.

Day #15

I was told I misrepresented Jordan's condition by saying he did a "dance." What I meant was he waved his hands to the music. He actually has been very sendentary, but brighter. He has started ordering everyone to take off their coats and sit when they arrive and has enjoyed playing with all his new toys. We have a long way to go still as he continues to have off and on fevers, still many tubes and has yet to get out of bed. We are on day #15 and are anxious to be out of here.

Coming Back

Jordan seems to be turning a corner. He is still having some fevers but not as high and they seem to be coming down. He has actually given us a few smiles and did a little dance to the Spinners "I Keep Working my Way Back to You," yesterday. The relief at seeing him "back" is indescribable. It has been 2 weeks of extreme stress, exhaustion and worry, but we are hoping things are looking up. The new motto in our family is "Hawaii '09. It couldn't come soon enough.

update

Please pray for relief from Jordan's fever, elevated heart rate and discomfort. We are hoping for some calmer waters today, as things have not gone so well for his recovery from second surgery.

Friday Dec. 7th

Jordan has had a rough rebound from this last surgery. We are hopeful that today things will pick up for him and turn in his favor. We are back to 10 different tubes draining, filtering, feeding, comforting, etc. So much has been done to his little body, he simply is exhausted. Presently, he is resting well and watching another episode of Elmo. Thanks for continued support and prayers.

surgery over

Jordan has just now come back to the room and did very well in surgery and recovery. Thanks for many prayers which made this a successful surgery. Though doctors have expressed their optimism, we will know more about the margins when pathology reports come back in several days.
Pray that no more cancer will be detected!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Exodus 15:26 "I am the LORD God who heals you"

Surgery #2

After lots of discussions with surgeons and oncologists, they have decided to go ahead with the second surgery tomorrow. It was very last minute news for us but we are anxious to move forward and get it over with. Please pray for him and the success of the surgery. It will be at 1:00 and probably about about 3-5 hours..

day 6 of recovery

Jordan is continually improving each day and we should be down to 6 tubes by the end of the day; hoping to leave here with only 2-3 tubes to work with. We anticipate going home in the next few days. His favorite hospital event is to be pulled through the halls of the third floor in his wagon and visit a couple of the Christmas music displays...it got me fired up to watch him delight in such a simple activity; especially in light of his significant medical struggles. Speaking of Christmas, I was able to join the kids on the homefront and we put the tree up and strung some lights. It was a big thrill for the kids and it wouldn't have happened if not for the blessing of friends dropping off a beautiful noble fir... what an exciting surprise! Becky continues to be a great inspiration to me as she endures the roller coaster of uncertainty and information that comes our way. Pray that we will navigate this holiday time with patience and understanding for one another. Again, we appreciate all that so many others have done in consideration of the busby family. You are loved! brent & becky

cancer under review

Our "game winning touchdown" has been called back and the official ruling has reversed the decision. That is the best way to personally describe it. Unfortunately the lab results have refuted all the hope, optimism, and belief of the the doctors initial assessment of the surgery. Preliminarily it was believed that all the cancer was removed. However, the margins were too close from the lab results to risk not doing more surgery. He will also need more chemotherapy than initially planned. We continue to covet your prayers and support. love, brent and becky
"Be strong in the LORD and in His mighty power" Ephesians 6:10

A Visit from Jamie

Jordan's favorite thing at home is going to visit the neighbor dog, so he was delighted today with a visit from Jamie the therapy dog. He is slowly on the mend.

Day 2 of Recovery

Jordan is doing pretty good today. After a rough night and morning they are starting to figure out what is going to work for him with medications. He has 7 tubes at the present time. We are anxious for him to perk up and start getting rid of some of that kind of thing. He had a few sips of juice today and is talking a little more. Thanks for your continued prayers.

A happy piece of news....Carin had her baby last night, Ryan Robert Towne. Please continue to pray for Ben and their family as they continue with Ben's treatment and adapt to having a new family member.

2 pieces of good news this week, we hardly know what to do with ourselves!

Recovery

Jordan has done well today. After 10 hours of surgery though he is pretty wiped out. We expect him to perk up a little more tomorrow, but for now he is mostly sleeping. Thank you all for your encouragement. It helps keep us going.

More Good News

The tumor is out and the reconstruction went really well. Jordan is in recovery and awake and we get to see him when he comes back to his room. He will be in ICU tonight just because he was under anesthesia for so long. We are thankful to God and all of you. Thank you for your love and support.

cancer gone!

we got good news from the doctor. He said it was the best surgery, of this nature, that he had ever done! He wasn't trying to flatter himself, but was saying that for all the information going in, combined with the surgery prognosis, Jordan's tumor came out better than any other previous surgery he had ever done. Thats a big answer to many prayers. A significant aspect of the surgery was entirely dismissed because things went so well. Specific prayer now will be for surgery healing, and for conclusive lab reports to reveal that the removed cancer mass has no live cancer cells.

underway

The surgical procedures have started. We met briefly with the two leading surgeons and shared a prayer with them concerning Jordan's protection and the blessing of their work. The start of this day has been founded in Christ and, by the end of the day, we believe we will give glory to Him in knowing the cancer will be gone and gone for good!

Preparation

We're at Children's in preparation for surgery tomorrow. Jordan is doing fine. We have met with all the surgeons and are ready to get this tumor (or pick your choice word, my sister has some nice ones) out. Please pray for the surgery to be as least invasive as possible, skill for the surgeons, and Jordan's well being. We will be here likely 7-10 days.

Side note

Brent and I realize that our last blog was kind of vague. The truth of the matter is there are issues with the surgery that won't be decided until they are actually doing it. Secondly, there will be longterm quality of life issues for Jordan and they are things we know as an older kid and adult he would want to be private. Therefore, we are not broadcasting a lot of details, but would very much appreciate your prayers for the surgery.

scan update

Thanks for all the faithful prayer support. We endured a good chunk of the day waiting for news about Jordan scans. Mid-afternoon we spoke to our oncology nurse practioner and then the surgeons. The news was sort of mixed in that the tumor had not changed in size, but also that there was specifically hopeful information concerning the possibilities of the surgery. We had hoped there would be some definitive reduction in tumor size...that was not the case. This potentially means a more difficult procedure to be performed. We will continue to pray for skillful hands during the surgery (Tuesady 7:30am-4pm) and that the cancer can be completely taken out. The doctors were unable to determine whether the cancer mass is live or dead. After the surgery, tumor cells will carefully be looked at to discover the answer to this uncertainty.
"With God all things are possible" Matthew 19:26.

Our pastor shared a great message today and highlighted the verse: "Without faith it is impossible to please God"
(Hebrews 11:6a). This verse is written in the context of Noah building the ark, and testifies to his faithfulness to save God's 'planet earth project' from the coming flood. As we attempt to find favor or "please" God in the midst of Jordan's cancer, the thought of faith & prayer has been a constant. We are so helpless and vulnerable right now concerning Jordan's health and future (perhaps the most we may ever be during our lifetime?); so many uncertainties concerning his medicine(s), pain, medical opinion, tumor size, etc. Though I am not always as faithful to pray as I ought to be, I know that prayer has been a tremendous and sustaining force to the well-being of our family and Jordan. We are grateful to all of those who continue to place the Busby's on their prayer list. And I guess that is why I am posting this blog tonight...to again solicit more prayers from the body. Honestly, I must admit that I feel a little uncomfortable, continuously asking for prayer support; especially when it has been awhile since receiving favorable news for Jordan. Regardless of my feelings though, I believe I need to be faithful in requesting prayer again from the church body. We are scheduled for scans this coming Wednesday. Please join in prayer and/or fasting if God so prompts your heart. If you wish, all are welcome to attend a special time of prayer after Wednesday night service at our church- 8:30ish (Calvary Fellowship/Mountlake Terrace). "God is a rewarder of those who diligently seek Him" (Hebrews 11:6b).

Brag Session

When I think the anxiety will overtake me, I either go shopping or brag about my kids. So here is my next bragging session. I know it's usually in poor taste to brag about your own kids, but I'm going to anyways. There have been so many sacrifices this past year and I sometimes think Tate, Luke and Sitara might get resentful of all the attention Jordan gets from us. But, instead they have developed tender hearts and have joined in doing their best to make things better for him and for me.

The other day when Jordan was throwing up, Tate without being asked went and got a towel and cleaned it up. When I asked him to set up a DVD for him, not only was it all set up, there was a soft blanket and a stuffed Elmo for him to sit with. Today, I asked Tate to entertain him for a few minutes while I took a shower. When I got out of the shower, Jordan was happy, blowing bubbles, and jamming out with Tate to "Rock Songs from the 80's".

Luke and Jordan were finishing the last 2 popsicles in the box. Jordan changed his mind about his selection and was demanding Luke's popsicle. I didn't say anything, and Luke said, "he can have it." When I told him how nice it was for him to give it up he said that of course he would. He didn't have to go through all the hard things Jordan did and he should have it.

Sitara picked out a ukelele in Hawaii that she really likes. Jordan has a new fascination with guitars and frequently goes into her room saying,"tar" "tar." He steals the guitar and is certainly not careful as he bangs it down the hall. Sitara always lets him do it without complaining.

They are very good to him and we are so proud of them.

Dates

We have some dates. November 21st we have scans and then meet with the surgeons. The surgery is scheduled for November 27th. I am so anxious about it, this is all I can write.

Home

We're home. We left Children's yesterday evening. Jordan is doing pretty well. I have to do iv antibiotics with him again. I hate it. All the stupid pumps got a lot of cursing today, but we are glad we are out.

more drama

Jordan picked up an additional blood infection as we continue to pass the chemo time away here at Children's. Presently, he has a mild fever and will have to clear the blood infection to go home. Thought we would be leaving in the morning, but will be here a day or two more-probably Wednesday or Thursday. Many have shared encouraging words, and when we feel like we don't have any more patience and endurance for this cancer "crap", it has been those visits, verses, emails, blogs, calls and cards that continue to pull us through. Seriously, we are sponging off this stuff simply in survival mode. A buddy called yesterday out of the blue requesting to come do my yard work. Whether or not the yard work gets done is not the point. This gets me fired up to know someone unrelated to my petty yard care issues wants to come share the burden! Another buddy came down to say hi and chatter about some of my earthly passions concerning football season, because he knew I needed some healthy and beneficial distraction from the brutal realities of our battle. Cousin Carin called just to check in, Jenny made dinner for the kids, Grandparents and others have been eyeballing the kids as well as making sure we are well fed, Dan gave me a sandwhich, Linda brought down a giftcard, Michelle offered a slice of her husband's birthday cheesecake, Carolyn blogged a power verse, Glen brought over a toy for Jordan, Kathleen brought Jordan a pair of Elmo slippers, Andrew came by to hang out with Jordan and some other cancer kids, Joe and Val hosted an overniter, Lisa dropped off a cafeteria debit card, and the list goes on... That is just a fraction of the blessings in the last day or two; not to mention all the prayers and considerate things I'll never see. It has nothing to do with the size or kind of charitable act, and everything to do with Jesus saying: "this is how I am taking care of you during your earthly struggle, and I am with you in the midst of the fiery furnace". I realize I'm sort of piggybacking off of Becky's comments last week about the Christian body taking care of the wounded, but it is well worth the affirmation. all our love and gratefulness, the busbys

"the joy of the LORD is your strength" Nehemiah 8:10

Chemo

We checked in today for chemo. We'll be here till Tuesday. Jordan is doing fine. All our "cancer friends" are here too this weekend including cousin Ben.

Elmo says, "May the Force be with You!"

1:30

Ok well I made it to church. I didn't think I would but we actually got there almost in time. The last couple of weeks have been very difficult for me. Nothing has seemed to lift me from my despair. I want to have faith and peace, but no matter how hard I try I cannot reconcile watching my baby suffer and the love of God. It angers me that this life makes so little sense these days. I have felt paralyzed. As I got home I realized the analogy of the paralyzed man in the bible. His friends carry him to Jesus. That is what church was like for me this morning. My friends and church family carried me. Wayne prayed a touching prayer for Ben and Jordan, so many came up to encourage me, congratulate me for making it there, tell me I looked nice (can you believe it after no sleep?) and slip checks in my kid's pockets to give to me later. I looked around the church body today and saw many who I know have suffered in similar ways and have survived. They have been here for us in our trial. It gave me some hope. A drink of cool water in the desert for me.

A Rough Night

People always ask these days, "How was Jordan's night?" That is such a relative question, but here is how last night went.

7:30 Change catheter bag, give Jordan a bath, draw up all his medicines and give them, set up feeding tube, and lay down in bed with Jordan.

8:30 Jordan is still awake so Brent lays down with him and they both fall asleep.

8:30-11:30 Jordan tossing and turning

11:30 I come in and Jordan insists I sleep with him. He tosses some more and I realize the feeding tube is wrapped around his neck. I thread it through his shirt.

1:00 Jordan waking up with bladder pain (he currently has urinary tract infection). Brent comes in. We give more medicine. Brent lays down with him and I go to the couch.
Fitful sleeping till 4:00.

4:00 I come in and Brent and I switch. I give more medicine. I realize the feeding tube is now disconnected and there is formula all over the bed. Jordan watches two rounds of Veggie Tales and one round of the Wiggles and is wide awake now feeling energetic. He is so wiggly now the feeding tube is wrapped around his leg and pulling down at his neck. I fix it.

6:00 Brent and I switch again.

6:30 Jordan has some breakfast and dumps his juice on the floor.

7:45 I come out and Brent goes back to bed exhausted.

8:00 Jordan, somehow full of energy goes full throttle into his new pastimes, dumping, throwing things in the garbage, and flushing the toilet. He dumps out the Connect 4 game a few times, all the bandaids, and alcohol swabs, and got ahold of Sitara's bead project.

10:00 I am writing this. Brent is still asleep. We probably will not make it to church today.

5 asleep

only dad up at the moment- writing a qwik update. Actually, it is a very good thing when 5 of us are all snoozing; especially if Jordan is in that number. Today was fairly even keel, though we did have to make an unscheduled hospital visit because of another bladder malfunction and Jordan has picked up a little cold...those are a couple specifics for prayer. The visit resulted in the usual vitals being taken, but additionally added was a blood & urine sample being drawn, nose suction for a nasal specimen (the worst one), and a flu shot. For all the discomforts, Jordan earned a bag of chips from the vending machine as we walked out of the hospital. He thoroughly enjoyed those chips (sour cream and onion) all the way home. Again, we so appreciate all the love we've received from everyone (I wish I could convey this truth in a more dramatic and believable way). The prayer, care packages, meals, volunteerism, cards, letters, phone calls, emails, etc. It's amazing! It just keeps coming and I know it all is contributing to Jordan's treatment plan and ultimate healing. We love you!

Doubleheader

Well after two and a half months of chaos and most of our time spent at the hospital, we for the first time, had not one, but two family outings. That means everybody including Jordan left the house together to go somewhere that people don't wear blue gloves. Jordan was overjoyed. Saturday we were invited to a spontaneous gourmet dinner at our friends the Smiths. And, Sunday was Jordan's birthday party at my parents. Both times he smeared cake and icecream everywhere and tore around the house dumping out whatever he could find. He even threw a beautiful European music box across the room onto the hardwood floor at my parents. You can get away with a lot when you are two and have cancer. Jordan had to go to the hospital today for labs which is not a big deal. We went visiting after. The highlight of the day was delivering a stuffed Elmo to another two year old (Kayla) who after 4 months is finally leaving the hospital. She usually has such a sad face, but she lit up with smiles when she opened the gift. It made me cry. We also visited Ben who was admitted yesterday. He is getting better, but please pray for him as he is recovering from a very difficult round of chemo. We are hoping to stay home, and don't have any other appointments until October 31st and then are admitted on November 2nd for his next round of chemo.

Happy birthday Jordan!

We praise God! He has spared Jordan's life and allowed us to celebrate the gift of a 4th child for this past year; an answer to a great number of our prayers, and those prayers of so many others, as Jordan has now turned 2. Though a tumultous year, we know that many did not wake to see this day, and it is only by the grace of God that air is in Jordan's lungs and that of our other children as well. The very first and most routine activities of each and every one of Jordan's hospital visits (both clinic and inpatient) is to take height, weight, temp., and heart rate. Of course this becomes a mundane and often boring ritual, but Jordan is a champion at it. Without fail, he sticks his leg out for the pulse check, jumps on to the scale like its a big toy, and holds up his arm for the thermometer. He enjoys these simple procedures because they are non-intrusive and don't involve pain. Many of the other calulations taken on his body are not so endurable or pleasant. Also, he knows the big reward at the end vitals is his choice of the sticker selections. All this being said, we are grateful to God for the hope of another year of more promising vitals being taken on Jordan, and that we are presently at home (yeah!) to enjoy this special day. The day will consist of Jordan's choice in menu items and some special little gifts and the birthday song. Tomorrow, provided health/vitals remain stable, it is rumor that there will be another celebration with grandparents and cousin Ben.
Romans 6:23 the gift of God is eternal life in Christ Jesus our LORD

Home Today

Jordan is doing well. He had a good night and is finishing the last day of chemo. He has gained all his weight back (he lost 3 pounds after a month of throwing up). This chemo doesn't seem to make him nauseous, but he has had some bladder irritation. We're glad to be going home and hope we will stay there till the next round. Please pray for Ben, Jordan's cousin has finished his chemo a few days ago and it is making him throw up a lot. They do not want to come back either! His website is caringbridge.org/visit/towne for those who have asked.

Sunday

Jordan is on his 4th day of chemo tomorrow. He's doing really well and we've been chasing him around the halls trying to keep up with him. He got to share a room with his cousin Ben who went home this morning. We are glad he is home but it was nice to be together if we have to be here. We've appreciated all the fun visitors. Can't wait to get our of here on Tuesday.

The Results

Jordan had his scans today. The results are kind of ambiguous but for the most part they said it was unchanged. There is one area that looks better than before (not sure if it is just a more clear scan or a change). But, it means the surgery might be less invasive. We're disappointed there isn't dramatic miraculous news, but are hoping that things will continue to change for the better. He starts his 3rd round of the new 5 day chemo tomorrow. Then, he will have one more the beginning of November and then the surgery sometime toward the end of November.

wake up Jesus!

i've always sort of considered myself one that would be sleeping soundly next to Jesus when the disciples came to him during the panic of the storm (Matthew 8:23-27). After all the miracles he had previously performed and considering His power, for sure I wouldn't be one too alarmed. And i especially wouldn't want to be one of those included in on the "O ye of little faith" group. Probably a pride issue for me. A few days ago, though, something happened to jar my reality. It was the middle of the night and Jordan was having another pain episode (of which Becky and I could only helplessly look on) And in the midst of our "why" questions and weariness, it suddenly dawned on me that i would actually have been the very disciple who, not only would have suggested waking the 'Master" up, but would have volunteered to be the first to try and roust Him from His sleep. I've never quite looked at this Bible story from such a desparate point of view. Presently, I feel like I am in the midst of trying to wake Him up in hopes that He will calm our storm and save Jordan's life. I wonder how maddening the storm got before the disciples actually did wake Him. It just says the waves were coming over the boat? How long was it before things got too desparate? In the waiting time for this storm to pass, we are seeking Him and His power. Jordan's next scans (which will detect cancer reduction or growth) are Thursday morning. We are setting aside Wednesday as a day of prayer and fasting in hopes of seeing God's miraculous hand of healing. After our mid-week Bible study at church (Calvary Fellowship- Mountlake Terrace), we will gather for a special time of prayer (approx 8:30pm). Whatever God might place upon your heart to do on this purposeful day, would be a great encouragement to us. Again, I speak as one and for the whole, the Busby family is so grateful for all that others have done to sustain us through our "dark hour".
BIG love,
the Busbys

Home

We're home. Kind of dragging, but not in the hospital.

Tubes

Jordan got a feeding tube today. We were hoping to avoid it, but I guess it is good now it is in. They are thinking it will make him feel a lot better and give him some good nutrition to help get past all this sickness. So now we are dealing with 3 tubes. We have all had enough.

Slowly Better

Jordan is slowly getting better. They think he probably has a new virus as unbelievable as that is. He is here getting fluids and I would guess we'll go home late today or tomorrow

unexpected hospital stay

"Red eye special" coming on as we are near the midnight hour...just got out of ER and transferred to 2nd floor room 2014 (arrived at 5:30pm). Jordan has picked up another bug of some sort. Lots and lots of puke and diarhea last couple of days. I'll leave it at that as far as specifics go. We'll be here an undetermined amount of time. We are grateful for Parents/Grandparents. Thanks u guys for the relentless love and support delivered at any given moment. Tonight is Grandma Cheryl covering the other little ones. Luke 17:10

ps thanks maggie and eric

Home

It was a long week, but we are finally home with no infections or viruses or antibiotics that we need to get up in the middle of the night to give. Please pray it stays this way. We'll be back in two weeks for the next chemo admit.

Better Today

Thank you for your prayers. Jordan is much better today. His bright little personality is back. He did throw up briefly, but then seconds later was dancing to his Thomas the Train DVD on the bed. He was saying "hi" to all the nurses today and reminding them who I was by pointing to me saying "my Mom." We're here till Friday doing the rest of his chemo.

1st day of Chemo

We started chemo this evening and will be here till Friday afternoon. I have been so discouraged all day. This was the date scheduled to take out his port, what would have finalized his treatment. I can hardly believe we have to keep doing this. Jordan is still not feeling good and low on energy, but is slowly getting better. Hopefully, the chemo won't knock him down again, I'm not sure I could stand it.

To Children's Tomorrow

Heading off to Children's for our 5 day chemotherapy regiment tomorrow. We are anxious to get it done. Jordan is slowly feeling better. He has just started to want to walk around again and is keeping food down. We're hoping he can keep getting stronger despite the chemotherapy coming on.

The Treadmill

We are not going in for chemo tomorrow because Jordan is still too sick. It will likely be Monday, so we will be there all week. I spent a a lot of time coordinating who was staying with the kids, how they were getting to practice, who would be here when they got home from school, birthday parties, lunches, helpers at the hospital and now I must start over. I asked Brent today, "aren't you exhausted?" He said, "Yeah, it's like being on a treadmill that you can't get off."

More of the Same

More of the same with Jordan. He is still been feeling bad and had to spend the day at Children's getting hydrated. His next chemo may be postponed if he isn't doing better. It is beyond frustrating and I feel like we can't catch our breath before we get knocked down again.

we are weak, He is strong

new lows to speak of. "Give me a break!" type of mentality swirling in our camp. I'll spare the details, but the reality is we are looking for some wins. In my first year of wrestling at PLU, i was on a 7 or 8 match losing streak. I got discouraged and remember wanting to get a win so badly. After last night i feel like i am on that losing streak again. First night home from a week at Children's and Luke threw up all night long. I've now got the bug and feel like stenchy cow manure (please excuse the nasty description). Becky is running on empty, Sitara will celebrate her 6th b-day party without either of the parental units, and Jordan is still trying to put an end to his diarhea, not to mention the rainy day; etc. In the midst of all of it, I here God calling me to obedience and perseverance. Easier said than done...much easier. There is no way I can do it on my own strength. My consoling thought, that continues to drag me through these valleys, is that someone else out there somewhere is going through something equally as challenging or worse (and we've certainly met a few during these past 10 months). I guess all of this points to the joy set before us...heaven! I'm looking forward to better days, but all their is to count in the midst of this storm is "Paradise City". The love and prayers from everyone else has been an abundant provison that He has provided for "strength" in the "here and now". Jesus said: "my strength is made perfect in weakness" II Corinth. 12:9

Home Tomorrow

Jordan got some sort of virus and has been much more lethargic than he usually is. He was feeling better than he was yesterday, and the one good thing in it all is that they put us in isolation so we got our own room. We should be goiong home tomorrow as long as he continues to do better. It has been tough week.

Not Feeling Good

Jordan isn't feeling so great today, and I'm hoping it is just because of all that's been going on and he just needs to rest. I'm not sure that last entry made sense. He has a suprpubic catheter which goes from his bladder out through the skin. When he doesn't need it anymore they'll take it out. Hopefully that is soon. We have a roommate who likes to whine and wail. Nothing like whining and wailing when you're having a rough day.

surgery completed

Jordan had surgery this afternoon to create a bypass out of his bladder through his stomach. This is something that can be redirected if pain clears and his urinary tract gets functional again. We are still hopeful new chemo drug can take out the tumor, but regrowth is not a good thing and it is likely that a larger surgery will take take place in a few months to get rid of all of the cancer. For now, we will spend some more time recovering and doing antibiotics, then go home. Jordan has been a trooper and that continues to inspire us. Family, church, friends have continued to "shock and awe" with love, prayers and encouragement. Ephesians 6:10 "Be strong in the LORD and in His mighty power"

Surgery Tomorrow

The plan is for the surgery tomorrow. They are going to do one more trial with the catheter out in the morning and if he has a lot of pain they will do the surgery to put in a suprapubic catheter which will be in till the inflamation is gone and he has less pain. The surgery is typically a day surgery and not a big deal as far as surgeries go. But, we will probably be here till Friday since he has to have 3 negative blood cultures to go home.

3 more Days

Jordan has a blood infection along with his urinary tract infection. He was his usual energetic self but definately ticked off this morning. He is not feeling good. That earns us at least 3 more days here. The surgery will probably be Wednesday as long as the antibiotics are clearing things up.

Back at Children's

Well we missed Saturday, but we hit every other day last week and Thursday twice. Jordan has a urinary tract infection. I am sick of writing bad news so I'm just going to brag about Jordan for today. He has amazingly more strength and energy than me. He is so sweet to all the caregivers here saying "Hi" and "Bye" to everyone he sees and always wanting to visit his favorite nurses. He willingly holds out his leg for blood pressures and loves to push the button on the thermometer. He is usually found running up and down the halls happy most of the time, even on chemo, even when he doesn't feel good. He loves to give me hugs and squeezes my shoulders over and over saying, "my Mom." He is an amazing little boy and while it breaks my heart that he is spending his childhood on the cancer ward I am so thankful and proud to be his mom.

Back to the ER

We went to the emergency room last night because Jordan was just having too much pain. They put the catheter back in and actually it was a very smooth night unlike the last time. He is doing much better. They are going to put a different kind in next week that is actually a surgical procedure but it should work and allow him to heal from the biopsy better. Next week has just got to get better, right?

A Bad Week

It has been a rough week with too many details to describe. The short of it is we are doing another trial with the catheter out and it has been really hard on Jordan. They expect it to be painful for him, but at this point putting it back in is prolonging the problem so we are trying to tough it out. We had a meeting with the urologist this morning that got both Brent and I down. It is hard to keep going when it seems we are going backwards. I am sorry for all the phone calls I have not returned. We really need the encouragement right now, I am just having a hard time keeping up with all that is going on. We're back to Children's tomorrow and have been everyday since coming home on Monday. What a drag.

Stressful Days

I don't have a lot of good things to say about the past 2 days except thank goodness for my mom and my great friends who have again stepped up to help me when everything is crashing in. Sunday night we were up the whole night dealing with the catheter issue. So far, we have had only good things to say about Children's and have been so grateful for the excellent care Jordan has gotten. Sunday, however, bad nurses, bad luck and a lot of incompentency combined to make a hellish night. One of the worst in this whole cancer experience. We have been home for a day and a half and no sleep, school starting, and piles of laundry have made me feel like I'm drowning in stress. We're back at the hospital tomorrow for an appointment. I think we've got the school thing covered, but it's going to be kind of chaotic until we get into the swing of things. Jordan continues to deal with pain issues surrounding bladder spasms and this stupid catheter. We're hoping they can take it out on Thursday. We'll keep you posted.

My Thoughts

While we were at camp amidst great people and having a super fun time, I said to Brent..." I just want to get in and out of this community as fast as I can. I want to be on the other side." The side that we've been on for our previous life where I am the caregiver and we are the camp counselors. It had nothing to do with the people or the place just the circumstances of our life. And now I realize we are not leaving this community any time soon. I had avoided getting to know families at camp and here in the hospital to a certain degree because it is too hard to hear their stories. Yesterday in a moment when it seemed that there would never come a day without fear and worry and pain, I walked out in the hallway and saw a family I recognized from camp.
She greeted me graciously recognizing I was having a hard time and encouraged me with their story. She reminded me how precious each day is with our children. Next came out the parents of a little girl struggling with her cancer and we all talked about camp, our families, the huskies, life. They seemed like people I had known for years. Their is a bond with those who have walked through the fire and even a joy in sharing the knowledge of what is really meaningful in life. This kind of suffering cannot be explained or understood, but God does reach out His hand and offer hope in unexpected places. I met a friend at camp who was serving as a volunteer there. She had lost her son to cancer 2 years ago. I asked her one day, "Laurie, how are you here? You don't get to choose whether or not you go through a trial like having a child with cancer, but you don't have to be here." She said, "sometimes the best things in life are the hardest." I think that's true.

A Good Night for Jordan

Jordan is doing really well with the new chemo and had a painfree night yesterday with the medications that they gave him. I, however, am feeling like that part in the movie Endurance when the guy reaches the top of the mountain thinking he is almost at his destination only to see a whole range of mountains ahead he must climb. I can hardly believe we are starting this again. My sister and Sean arrive today to visit. We can't wait to see them.

Day 2

We're on day 2 of the new chemo. Jordan is not pleased about being hooked up so long. He is feeling fine, and wants to run around. We're doing our best to keep him busy without busting out his line. Very challenging. Our school situation is very complicated, but we are looking to hire a nanny to help in the morning from 8:45-12:45 and maybe be flexible to come at 7 am some days. It would involve some days helping out with the kids at the Edmonds Homeschool Resource Center where they take classes and somedays being with Jordan if he is doing well. Just thought I'd put it out here since we don't have a lot of time to find someone. I'm interested in personal references the most as I don't want to have to do the screening as there is so much going on right now.l

Long Days

Jordan starts his new chemo today. He was hooked up this morning which is going to make climbing running and getting into trouble very frustrating to him. We have talked with several doctors about the upcoming (3 months or so) surgery and it is very upsetting. Brent and I are trying to absorb the sacrifices we're going to have to make for his life. It is hard to take in. We've appreciated your calls and comments. We're hanging out here till Sunday or Monday.

extended stay

Hello again family and friends. We got news from Jordan's primary cancer doctor that new chemo drugs will likey begin as soon as tomorrow or wednesday (5 more days in the hospital for this round of drug). We are now our now officially in cancer "overtime". This next round of chemo drugs is in hopes of making the tumor smaller for an eventual surgery. The news is not good concerning having to be more aggressive about getting rid of the cancer, but we are hopeful for the new chemo drugs to be more effective and that the surgery will get all of the cancer. Thanks for remaining with us in prayer and know that we continue to trust Jesus as our ultimate and Great Phyiscian. love, team busby

Waiting, waiting, waiting

Thank you so many for calling, emailing and asking about us. This has been such an emotional week, it has been hard for me to talk to people or even update this blog. I have hesitated to write this because there have been so many dashed hopes this past week, but there is still a chance that treatment could be at the end. Our doctor has been out of town for the last week and he is the expert on Jordan's kind of tumor. Apparently the results from the biopsy and scans are not as clearcut as we were told initially and he really has the final say. He is coming to see us today and I know he is concerned, but we are hoping once he reviews all the info there is the possibility of some different news. Please pray, it is so hard to be hopeful and then disappointed over and over. We have been at the hospital for the past couple days. Jordan has had unresolved pain from the biopsy and they are trying to get it figured out. We may stay another day.

Life seems at a standstill for us with the constant state of waiting, but then I realize that life is still moving on. School still starts in a couple weeks... birthday parties, soccer practice, Brent's work. It all seems to be coming at us fast.

My cousing Carin is here with Ben who is doing much better, but has been having intermittent fevers, so they are not able to go home yet. We hang out with our family, eating take-out, worrying about our sweet boys, chasing them down the hall in the cars and wishing we were back in Hawaii. Someone asked Carin where Ben was yesterday and she said, "oh he's down at Jordan's condo hanging out." Life just doesn't make sense these days.

Bad News

We just talked to the doctor and he told us the bad news that the abnormal sample showed live cancer cells. This will mean more chemotherapy and a major surgery. It is absolutely devastating news. We won't know more details till Tuesday.

still "on our knees"

thanks for continued prayers from everyone. Today has been another day of waiting and time for prayer. Finally, at 4:55pm, we spoke with dr. Pendergras and he gave us all the info he had. Again, he told us we would have to wait another day because of what they found in the pathology lab. All the samples gave no evidence of cancer. However, one sample of the tumor did not appear like the rest and this continues to cause concern. They again need to look at this sample and will do particular testing to confirm its status- whether it is an abnormal cancerous growth or leftover scar tissue and inflamation. Hopefully, we can have a definitive and praiseworthy conclusion to this ordeal tomorrow afternoon. Love, the busby's
"But those who wait on the LORD will renew their strength" Isaiah 40:31

more waiting

more waiting, as we learned today at 12:30pm that jordan's biopsy samples had been delayed in being sent to the pathology lab. Now we have been told to wait until 4pm tomorrow to have more information. i guess that means more time for prayer coverage. love, team busby

more waiting

had biopsy today

A grueling day of uncetainty and waiting for appointments and doctor conferences; exhausting/stressful. Jordan was a trooper and held out all day until his biopsy surgery at 5:15pm (pretty much no food or water for him since early this morning). The procedure lasted for nearly an hour and half and then he was in recovery for a while after that. Both the urologist and cancer doctors spoke with us tonight before we left the hospital at 8:15pm. The samples from his tumor have been sent to the pathology lab and we will know more information tomorrow (Wednesday). They are hopeful that it is not more cancerous growth, though that is still a possibility as to what it could be. Thanks for your continued prayers...specifically for his pain to subside and for good rest. all our love, Team Busby
(I can do all things through Christ who strengthens me- Phil. 4:13 & be strong in the LORD and in His mighty power- Ephesians 6:10)

on hold

we're on hold for more specific information about Jordan's tumor. The scans today revealed that there is a mass again pushing on his bladder. Worst case is the tumor is growing, but other real possibilities may be that it is scar tissue that has shifted to a different position or that there is bleeding from the dead tumor causing it swell. Chemo has been postponed for tomorrow and we will be seeing a urologist in the morning, in order to set up a biopsy that will take place in the next day or two. Our hope and belief is that the biopsy will show dead mass. Please continue to pray for us during this time. We love you. Team Busby

A Week of Joy and Heartache

I am not even sure how to summarize our week. Camp was incredible. The week started out rough though. We came home from the hospital frantically threw our stuff together and headed out for camp. The first night everyone sat around and introduced themselves. I unfortunately was sitting by 2 parents whose kids had the same diagnosis as Jordan, but their tumors had come back. That night Jordan was up every hour screaming with cramping. His symptoms from treatment are so often the same as they were from the tumor and the events of the night made me extremely upset. Sue, our nurse practitioner helped calm my anxieties the next day and agreed to do his scans early believing that they will give us more peace of mind. So they are scheduled for tomorrow. That day was the spa and as I described before, it was amazing. Things got better with the following night as we tried a new medicine and he slept the whole night giving us more assurance that his pain the following night was due to treatment issues.

On Wednesday morning our other nurse practitioner, my friend Kristin, showed up for the day. She told me that my cousin and her husband were at Children's that day on the oncology floor and their son was being diagnosed. I was in complete shock. Ben and Jordan are about the same age and we had just been in Hawaii with them a month earlier. Even more unbelievable, her husband is a pastor at UPC the church that sponsored the camp. He had commissioned the Side by Side team that Sunday before camp. So all the people leading the camp knew and love Carin and Jeff and they too were shocked. The rest of the week was bittersweet. My family was being served by such amazing people who were going above and beyond to make it a wonderful week for us, and yet my heart was so heavy for Carin, Jeff and Ben. As the news got out to the camp staff, I realized that beyond all the fun there was an incredible prayer team and people praying constantly and fervently for our family and now for my cousin's family. I was overwhelmed. We are believing and hoping for the best for them. And the one consolation in hearing such bad news was that all the wonderful, Christ filled people we met at camp are their church body, and will love, serve and walk with them through this trial. Please pray for them. They have a long road of treatment ahead them and it is overwhelming. Please also pray for our scans tomorrow. This is the final scan that will indicate if we are done with treatment.

Please Pray

Camp has been going great, but we have been absolutely heart sick to learn of a family member whose child has also been diagnosed with cancer this week. Please pray for them.

Tully's, go carts and a whole night of sleep!

Another great day. The biggest blessing was that for the 3rd time in his life, Jordan slept the whole night. We tried a new medication and maybe that was it, but it was a relief after such a bad night on Sunday. The kids competed in the fishing competition and Luke and Brent caught the biggest fish at 7 lbs., they did the zipline, and square dancing, swimming, tie die, beads...it goes on and on. They really go all out. Jordan spent lots of time riding in the golf cart, playing at the playground, doing playdough and climbing in the tunnel. He has been visiting the Tully's cart for smoothies. Regular juice is just not good enough anymore! To say the least, the kids are into it. Brent got to go with the guys today for go cart racing and going out to dinner. We have had a great time. It's nice to have people to entertain the kids and relax a little. Everyone here has different ways of dealing with cancer and a lot of people like to talk about all the time. We are staying away from that. As best we can, we are trying to put all that aside and just have some good time with family. Jordan's chemo has been rescheduled for Tuesday and he is actually going to have his scans on Monday which will be the "end of treatment" scans even though he will have one more treatment which will now be probably on September 7th.

Camp Side by Side

We made it to camp! Everyone is having a great time. It was a rough start, as the kids did the packing and it was chaos getting out of the house. Tate actually packed Sitara's bag for her so she has an interesting wardrobe this week including 2 pairs of pants and 3 shirts (one came dirty) and nothing that goes together, but oh well. They each have their own "buddy" which caters to their every whim. They did water balloons, the zipline, arts and crafts, canoeing, swimming, the slip and slide and have visited the all day free Tully's cart for their italian sodas. They had a spa day today for the moms including haircuts from an upscale salon in Belltown, manicures, pedicures, facials, and massages. The helpers (younger kids) passed out chocolates and brought custom orders from the coffee cart. It was amazing. Jordan likes his buddy. She is a grandma and retired nurse and is great with him and very helpful to me with all the antibiotic stuff. Jordan still having bad nights, but is currently sleeping peacefully so hopefully tonight will be better.

Going Home

We are going home today which is good. We get to do the 4 times a day IV antibiotics again though which is a huge drag. Jordan is back to himself so they gave us the ok to go to camp. I'm really glad because I know the kids would have been really disappointed if we couldn't go, but it is going to be interesting trying to do all this antibiotic stuff there.

Back at Children's

Jordan is back at Children's with another blood infection. He came down with a fever yesterday afternoon and had a rough night. He seems to be doing better this morning and is getting his antibiotics so hopefully he'll continue to feel better. We're not sure about going to the Side by Side camp. If he does well, he can still go, but will have to do IV antibiotics there. We're here at least until Sunday. Thank you for praying for Jordan.

The Countdown

Things are moving along. We are down to 9 more visits to Children's which includes 1 short chemo visit and 2 long ones as long as nothing goes wrong. Jordan has had ups and downs, but for the most part is doing really well. He is busy as usual. We are getting ready to go to the Side by Side family camp that UPC sponsers in a couple weeks. It is a camp for families with a child with cancer. They have swimming, horses, a zip line, fishing. All that kind of stuff. And, the kids get their own counselor each to hang out with. They are excited to have their own agendas not dependent on one another. It should be really fun. The countdown is on. In a week and a half it will be the End of the End. We are praying for good reports and a huge celebration party in mid September.

The Middle of the End

I almost didn't realize it in the chaos of the 4 days at the hospital, but we are to the middle of the end. Jordan is feeling much better, and his counts are back up again. He has 3 more long chemo appointments and 2 short ones and then he is done with treatment. The last chemo appointment is August 31 then scans, and then the port comes out as long as everthing looks good.

Probably Home

They have tested him for all kinds of bacterial infections and have determined that he probably has a virus. They are going to take him off the antibiotics and probably send us home. He is feeling a lot better, but his blood counts are way down for him.

3 times to Children's

I came in yesterday for Jordan's clinic appointment. He was feeling kind of lethargic when we were there. Later at home he came down with a fever, so I took him back in the afternoon. They checked him out, gave him some preventative antibiotics and thought he was ok to come home. When we got home, he started throwing up and had diarrhea, so we came back AGAIN, had to go to the ER and then were admitted around 1 am. So now we are here again. They think he's got a virus and hopefully will bounce back soon. I absolutely hate to write this in front of the Hawaii pictures, but wanted to update everyone.

Hawaii

Well we are back from Hawaii. The trip could not have been more perfect. Jordan was healthy and had a great time playing in the sand, the ocean and the pool. The weather was great. Julie and Sean and the wedding were so beautiful. We loved being a part of it. Everything was so fun. Tate and Luke had a blast on their boogie boards. Sitara was the ultimate flower girl looking forever in the mirror and twirling for the photographers. We so much enjoyed getting away. We are back at the hospital today for Jordan's long chemo appointment. The contrast could not be more dramatic. But, we are thankful to have been able to go and he is doing well.

Two Binkies

Better Days

Jordan is doing well. He is finally sleeping a little better. What a relief! And, as usual has lots of energy. He is as silly as ever. He thinks it is very funny to have 2 binkies at one time, sneak up on people, wap you on the head, lay on the cat, have yelling contests with his brothers, smear Oreo cookies in his hair, and dance and sing. It is so good to have him feeling well.

The nightmares of chicken pox and rotovirus chasing me around are fading. We can't wait for Hawaii. Please pray for health.

The Chicken Pox is Back

Fortunately it is not Jordan. Sitara must not of really had it the first time but now she does. That means Jordan gets to do his whole preventative treatment thing again and I get to worry for the next month about him getting it. I am very tempted to write a long list of swear words, but will refrain. Please, please pray again for his protection.

Sad, Sentimental and Sweet

Chicken Pox, Rotavirus, end of school activities, the approaching wedding, long hours at the hospital and little sleep have made me very weepy this week. It seems the littlest thing can make me cry. Here are some of the sad, sentimental, and sweet moments of the week bringing me to tears...

The mean lady in the Children's parking lot yelling at me for not being able to repark her Miata in the spot next to mine because I pulled in too soon. Can you believe some people?

The singing chaplain coming to cheer up Jordan and I with Jordan's favorite song "Bubble, Bubble, Bubble." He had been hysterical and tired and finally settled down and smiled.

The Peeples family at Tate and Luke's school who very recently lost their mom to cancer sending us a meal.

Seeing my old friend Shannon's sweet beautiful 5 week old baby at my sister's wedding shower after all day in the hospital with sick children.

Seeing a family at the hospital back after their 4 year old's treatment was over and is now again starting as her cancer has returned.

Describing to Tate and Luke the details of a wedding processional and imagining Julie walking down the aisle.

Getting to talk by webcam and an online service to our dear friends the Andersons in Uganda for an hour while in the hospital. We miss them so much!

Anyways, if anyone has been following my crazy countdown system, you will realize that today is the first day of the Beginning of the End. The rotavirus and abdominal cramping seem to be on the way out and we are hoping some decent sleep is around the corner.


For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone. Psalm 91:11-12

19 Days

We are done with the chicken pox, so that is good. Jordan could still potentially get it, but I don't think he is going to if he hasn't by now. They discovered that the current reason for the stomach cramping is that he has rotavirus again (nasty stomach flu). The same thing that got him in the hospital for 4 days in March, but it is not as bad. He is still waking up a lot, but I am hoping we are getting to the end of it. He has his all-day chemo on Friday. 19 more days till Hawaii. I can hardly wait.

Quarantine

Luke is done with the chicken pox now, but Sitara has a mild case. She feels fine, but I still have to keep her away from Jordan and we can't really go anywhere. I think I may go crazy! Jordan has been having a lot of night cramps again, and no one is really sure why now. We're all trying to figure it out and one day will actually get to sleep at night again.

Chicken Pox

I've had some trouble posting, but am finally getting this on. Another twist in the road, Luke has chicken pox. He had the vaccine, so he has a mild case of it. However, it is very important that Jordan doesn't get it. He got an IV preventative medicine on Monday, and then has to take an antiviral medicine 4 times a day for 19 days. I am feeling very overwhelmed with it all. Please pray for his protection.

Some good news is Julie's fiance got home to Virginia yesterday from his mission to the Middle East. We are thankful for his safe return home and are anxiously waiting for our trip to Hawaii in June for the wedding.

The End of the Middle

Well we are here at Children's for the all-day chemo. We are 5 hours in with 12 more to go. That means we have 5 more long chemo appointments, 4 short ones, and a total of 25 appointments left as long as everything goes ok. We are officially at the end of the middle.

We came in today feeling like this is routine. Jordan has been doing well except for at night as usual. When we got here, we found out his little friend Ethan (8 months) is not doing well. They are the sweetest family and I am worried about him. Please pray for him. It is strange how for a moment it can all seem routine until we hear about Ethan, and I am sad again.

For now, Jordan is asleep and we are hanging in there.

Mother's Day

Aren't they sweet? This Mother's Day I am counting my blessings.

a post from brent

I'm feeling compelled again to give a dad's take on all that has been going on with this cancer stuff. I know I don't record my thoughts that often, so never quite sure of how to share an update. Jordan's status has been well the past couple of weeks; good doctor reports and no other illness/infection going on. Thanks for your love and prayer- that is making a huge impact on his health. Also, he has been walking more and more lately. Though he still crawls (he's still very fast on all four), walking is becoming more than just a novelty and entertainment value. He is now seeing his legs as a legitimate form of transportation. Medicine is still a real chore for him, especially at night, but I will say that he is much more resolved and compliant about taking it than in days past. The past couple of days have provided some sun breaks and he loves getting outside. His favorite backyard pastime is going down the slide. The swing has lost his interest, as he has taken up a new challenge of trying to climb up the slide as well as the thrill of going down it. Hopefully, the Spring gives us lots more outdoor opportunities. Inside the "casa" things are lively as ever. The crib is out of commission, as he has now mastered climbing out of it, though it is adjusted to the bottom notch. Time to bring out the toddler bed again. Until that gets set up, it's us three together on the parent mattress. The snack cupboard had to have the safety lock put on it, as were having a constant battle keeping him out of all the crackers and cookies. He is still fired up about that executive decision that didn't include any of his intentions. With his intensity, I won't be surprised if he figures out the latch pretty soon. Jordan still loves playing peekaboo and sitting on Nermal (the cat) as indoor pastimes. And by the way, Nermal should get some sort of cat award as he has behaved quite nicely for Jordan- I think they have actually bonded a little. Perhaps that is all I should write for now. We love hearing from everyone, and please know we are extremely grateful to God for the healing that is taking place in Jordan, and for the gift of family and friends that continue to give their love and prayers. Proverbs 17:22 a cheerful heart doeth good like a medicine.

Good News All Around

The scans came back and the tumor has shrunk condiserably! We are very happy. The cramping pain he had been having was making me so worried. The doctors expect that there will always be some residual tissue there from the tumor even if the cells are dead, so it may never be completely gone. They are only concerned if they see new growth. So everything is right on track. The other really good news is that the new medicine they gave him worked and he slept really good 2 nights without cramping pain. So they think the pain was from reflux probably caused by all the treatment stuff. He got his chemo last night and so we are now at home. It was almost a week at the hospital, but it was productive so we are glad. We do have to give him the IV antibiotics at home for an hour each time at 6:00am, 12:00pm, 6:00pm, and 12:00am till Wednesday. Thank you everyone for the food, calls, visits, and prayers.

New Plans

Well they decided just to do the scans tomorrow since we have been anxious about them and we are here anyways. They are still not concerned, but hopefully the scans will ease our minds. They'll do the chemo after that and then we will be home on Friday.

Day 4

More bad news and good news. Last night was a really bad night. Jordan had lots of cramping pain keeping him up a lot. It gives me flashbacks to when he was initially diagnosed and even though none of the doctors think this pain has to do with the tumor, it is impossible to be rational and not be anxious. They are going to try another medication. Apparently, it is common for kids undergoing treatment to have abdominal cramping, but hard to always understand where it is coming from.

The good news is his counts went back up again, so they are going to have us stay and do his chemotherapy tomorrow. and Assuming everything is ok, they'll send us home after that. I'll have to give him the IV antibiotics 4 times a day at home. That is going to be something. It is a two person job, because he is so wiggly and grabby and you have to keep everything sterile.

Day 3

Well the good news is they are going to send us home tomorrow afternoon it looks like. He has had 2 negative cultures and they assume the 3rd will be negative so they said they'd send us a little early. The bad news is that all his blood counts are really low. That has never happened before. They gave him a blood transfusion today. One of the nurses said, "just what he needs, more energy!" For most kids if they need a transfusion they are really tired and worn out, but not Jordan. Anyways, they can't give him his chemo till the white blood cell count goes up. So we'll probably have to come back on Monday for that. Another bummer is the the combination of the previous chemo drugs and low counts has made walking difficult again.

Day 2

Well we're here at least till Thursday at this point. Jordan's counts are low for the first time in this whole ordeal which is a little discouraging, but today he seems to be feeling good. He's done lots of trips around the floor in his yellow taxi car. He's greeted all his friends..Zach, Lazar, Jack (from radiation), Ethan and all his favorite nurses. He's had a visit from the clowns and the singing chaplain. He is enjoying his new Elmo book from his friends Lisa and Lucy and his suitcase of toys from his friend Liz. His favorite is the Angelina ballerina Nutcracker piano which he plays and dances to. We are in a huge room by ourselves which is nice. It's usually for 3 people but we have it to ourselves. Brent said he felt like he was at a sports bar with all the TVs. I don't think I'd take it that far. Thanks for your prayers. We'll keep you posted.

Back at Children's

Jordan came down with a fever early Saturday morning. I took him to the ER and they did a blood draw, checked him out and sent him home. Unfortunately, the blood cultured came back positive for a bacterial infection so they called us last night at 10:00 and told us we had to come back and get admitted. It was a long night. We went to the ER again and then finally to a room by 1:30 am. So the rule is that we have to have 3 days of negative cultures until we can go home which means we're here at least until Wednesday. He is supposed to be admitted Friday for chemo so they might just keep us till then or try and do the chemo early so we don't have to be here that long or come back on Friday. Jordan is doing pretty well. He seems a little out of sorts, but is feeling ok. This is like the last time he had a blood infection. They are not worried, but it is very important that he gets the antibiotics so it does not become serious.

Speed

We are finally past some of the side effects of the radiation which is a relief to me. He seems to be feeling good today and slept well (for him) last night. And today, he actually had a two hour nap. I couldn't believe it! His latest past times are ... Taking off his shoe as I'm putting the second one on, and then screaming till he can get his socks off too, sitting on the cat, wearing Sitara's headbands, messing up any game the kids try and play, unrolling all the toilet paper, helping Tate and Luke play video games, pulling all the books off the shelf, and WALKING! Finally! A guy at the library called him "Speed" and Sitara thought we should actually change his name. Not a bad idea since he can undo anything you're trying to do in no time. I keep trying to post new pictures but have had some trouble. Hopefully, I'll get them on soon.

The Last Wednesday

Jordan's friend Kyle from radiation sang a little song yesterday (his last day)..."Today's the last Tuesday, the very last Tuesday, do ta da do do do!" So today, I can't get out of my head.."Today's the last Wednesday, the very last Wednesday, do ta da do do do!" Thank you everyone for celebrating with us. Brent and I got to go out to lunch. Jordan spent the rest of the day swinging, playing in his car, yelling at the dogs, and getting into the animal cookies in the cabinet. He loves the pink and white frosted ones. We've got an appointment tomorrow at Children's and then we're there all day Friday for chemo. Then we will be at the very middle of the middle of chemotherapy, but definately on the way down the mountain.

The End of the End of Radiation!

Three more days of radiation left. We had thought a while back we would be done today, but they had miscalculated the days and we are actually done Wednesday. Things went smoothly today. Jordan did great and came home and tore up the house with all kinds of energy. Tonight he has been kind of fussy and then I realized he is getting 2 big molars. Sometimes I forget about the regular baby stuff.

My heart has been heavy for the other 3 boys at radiation. Please pray for them too.

In the midst of this very difficult time, God has blessed us tremdendously with a Church, family and friends who have not worn thin in lifting us up. We are so thankful for the meals, the cards, the gifts, the help and all the encouragement we continue to get.

Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze Isaiah 43: 1-2

6 more days

Sorry I haven't posted anything in awhile. This whole radiation thing has kind of done me in. I don't think I have ever wanted anything to be over more than this. We have six more days left and I can hardly wait. All the boys are counting it down. Everyone knows each other's last day. Jackson is done on Friday and then gets to go home. Kyle is done on Tuesday and Diego and Jordan on Wednesday. There will be some major celebrating. Jordan is doing great. He is a real trooper with it all. He now holds out his leg for his blood pressure and his finger to check his oxygen. It is so sweet. There have been lots of problems with his line and some other procedural stuff though. It has been a real pain in the neck and has kept us very late the last few days. He continues to have lots of energy. Nobody can believe it because the radiation, anesthesia, medicines and chemo are all supposed to make you tired on their own. He's getting all of it and has now quit taking naps! I am so happy he has lots of energy, but all that stuff is making me tired, it would be nice if he occasionally got a little sleepy.

The Middle of the Middle

Jordan is back to himself again. What a relief! I was so happy to answer the nurse this morning when she said...any nausea or vomiting? no. Any fevers? no Any diarrhea? no Anything new? Thank goodness, no. We are at Children's now and he is getting his chemotherapy. He is happy eating his ritz peanut butter crackers ( a new staple for him) and watching Elmo. He does not like to be hooked up though because he can't move around the room and climb on things.

Last time we were here for chemo my friend Liz said, " You know what? You are at the end of the beginning of this whole thing. Pretty soon you will be at the beginning of the end, and then before you know it, it will be done." So I am happy to say, we are now at the middle of the middle of radiation and the middle of the middle of chemotherapy. At the end of next week, we will be at the end of the middle of radiation which is really the same as the beginning of the end. In six weeks that's where we'll be with chemotherapy too. I hope you can all keep track of that!

We are out of here at about 10:30 and then will be happy to be home from the hospital for a weekend. Our first weekend at home in a while.

Home

We came home on Sunday night. Jordan is finally feeling better. He is still very lethargic and a little irritable, but so much better than a few days ago. We're continuing to trudge through the radiation appointments. Friday is one of his long chemo days so that one should go from about 8 am till 11 pm starting with radiation. One bright spot was he slept the whole night in his bed. He's never done that in his whole life. Hopefully, it was not just because he's been sick.

Admitted Again

Another short one. We have been hit hard. Jordan has rotovirus and is in the hospital again. It has been one thing after the next for the last 2 weeks. He has been having high fevers, vomiting, and bad diarrhea so he needs to be here to get hydrated. Yesterday had to be one of the hardest of my life. It started at 7:00 am going to radiation, then to Children's since he was so sick. We were up all night with him with a high fever. To top it off someone stole my clothes out of the drier here. I had to convince the nurse to give me some scrubs so I didn't have to wear hospital pajamas to the UW this morning. He did well with radiation despite feeling rotten. Today, he has slept all day. We imagine he will be here for a couple more days. Thanks to everyone that has stepped up to take the kids and help us out. Sorry if we haven't returned calls or have dropped the ball with comittments, we have just been so preoccupied.

Another bug

Not much time to write this week. It has been a tough one. Jordan now has some sort of GI bug and has been throwing up, a fever, and diarrhea. He still goes to radiation though. Poor little guy. He has just had one thing after the next. However, this is the first day we have not been at both hospitals in the last week. His fever seems to be getting better and he's been keeping some food down today.

Going Home

Well they gave him the go ahead to go home today, so we are happy to be out of here. They are coming this morning to train me to give him the IV antibiotics at home and we'll have to do that for about 10 more days. We're back at the UW tomorrow for radiation. I'll be happy to get through this month. The good news is that nothing slows Jordan down. He's had 5 days of radiation, an ear infection, a cold, a blood infection and little sleep, but he is still climbing all over, socializing with the nurses, playing with the kitchen in the playroom and just generally busy, busy, busy.

becky said she entered a short "posting" earlier today. It has been some time since i last entered one so perhaps i'll give a bit of an extension to the words she typed earlier. Not having read her earlier entry, perhaps there will be some overlap in our comments. here goes- i too will try and keep it brief. Not sure what exactly has prompted me to write, other than, as i stated before, it has been quite some time since my last remarks about all this cancer stuff. yesterday, jordan got readmitted to the hospital for what has been deemed as bad blood reports (cutting through all the medical jargon). he doesn't leave here until he gets three consecutive days of good blood reports. best case- late sunday or perhaps monday. lets not speak of worst case. yes, it "sucks". that is how we describe our mood when things are not not going well; and reports are not favorable; and we would like to use cuss words like shit and damit, but do our best to practice godliness instead. i'm falling behind at work and starting to feel the affects as i ask others to cover for me, or i cancel a meeting, or i drop the ball or i forget to complete some paperwork, or i simply can't make it to the important meetings, etc. And by the way, i couldn't ask for a better staff to work with at Shorecrest. Everyone has been nothing but supportive and understanding. Becky keeps trudging along and lately she has really been picking me up- always rallying to my defense and making the best out of the worst. The target is always the same- what can we do to get jordan better?! that part is simple- nothing. It is all in God's hands, and Jordan is in God's hands. I am way too easily distracted from that simple reassurance and hope. i try and do things or make things what they are not. God and Becky please forgive me for that. Aside from the dimmer (though honest) perspective, there is a call to thankfulness. Today, i am again reminded of how God is doing His healing work through our family and friends "the body of believers". just to list a few (and seriously the list could go a lot longer)

Maggi- "don't worry for a second, we'll take care of it for you"
tami- our kind and compassionate radiation nurse bringing special toys for jordan to discover and rediscover
LIz and Lisa bringing a suitcase full of hospital toys
jenny, stephanie, nikki, and val canceling Bible study to come to the hospital to encourage and love Becky
mom busby- watching the little ones and paying extra attention to all of Sitara's stories, plus "treats"
sister Julie- quiting work early to be availablefor days like these
joe, eric- checking in as always- "hey busby how are you doing with all of this- do you need us to take the kids?"
josh- busby, let me give you some biblical encouragement
renee- "no problem i'll help u out with whatever"
brian and liz- "hey don't worry about luke we got him"
jenny- "sure we'll take tate another nite"
mom thrall- "no problem for me to cancel my plans. see ya soon"
kate- "just calling to see if you need anything"
dad- "we're praying for ya"
PT department- "saw you on the admit list and we just want to help out in any way."
peter and barb- let us bring you some "taste of India" for dinner
Amy- no problem to have Sitara. May lynn is having her birthday party and would love to have sitara celebrate with her
children's nursing staff- they all get A's on their report card
Dr. hawkins- paid us two visits today; this man doesn't sleep!

What blessings of family and friends we have in the midst of a life crisis! again, that is just to name a few

Thus says the LORD: "refrain your voice from weeping, and your eyes from tears; for your work shall be rewarded...there is hope in your future" Jeremiah 31:16,17

Children's again

Jordan is sleeping ---a rare event, so I have a second to write this. There has been a lot going on, but not a moment of free time. Jordan is at Children's till Sunday or Monday, maybe longer. He has a blood infection which sounds really bad, but no one seems worried about it. It is very important that they treat it with IV antibiotics, which is why we are here, or it could become bad. Apparently, it is very common with kids who have central lines. He is still getting radiation, we just go back and forth from Children's to the UW. The radiation has gotten progressively better. Jordan is sharing rooms again with his buddy Claire. Another toddler and Elmo fan.

Radiation

Sorry, we haven't gotten to this so far this week. We've had trouble with our internet access. It has been a rough start to radiation. Jordan has been handling it well, but it is different at the UW. They have not been very good at communicating with us which makes things stressful. Jordan has an ear infection and got a fever today so that has added an extra trip to the clinic and the ER. Please pray for us. It has been hard, but we are thankful Jordan is doing ok despite his other ailments.

#5

This is our 5th long chemo. Kind of routine. Jordan is doing fine. His favorite thing to do is climb up the outside of the crib. We're passing our time watching Sesame Street Videos and planning trips for when this whole thing is over. Radiation starts on Monday. I have more peace about it now, but am anxious to get it over it. The last day will be March 30th. Thank you for continuing to pray for Jordan. He is getting better.

Tuesday

We're still kind of a sick house over here. The good news is Jordan does not have any dangerous kind of virus, just a yucky cold. And Luke is still fighting it too. He got an antibiotic yesterday for an ear infections and some fluid in his lungs, so he is doing better too. Please pray for them, and us. I'm really tired. I was having trouble with Tate's spelling words the other day, so it is pretty bad. I could not remember how to spell "paragraph" for the life of me. Anyways, I think we are turning a corner.

Thank you to so many who have brought meals. Jordan (and us) thoroughly enjoyed the enchiladas and chocolate cupcakes tonight. He was covered head to toe in chocolate and was delighted. It is such a blessing not to have to cook.

Sunday

I just haven't gotten to this in awhile, so here is the news. Last Wednesday, Jordan went in for the simulation of the radiation. That consisted of putting him under anesthesia, making him a special shell so he will be in the same postition everyday, making him a special mask and giving him tattoos (they are just little dots), also for positioning. Then they did a bunch of scans.

On Friday he went in for his chemo appointment. The doctor looked at the scans again from last week and said she could see several spots where the tumor was dying even though it is the same size. That was a relief after last week.

Sickness has been running through our house and Jordan has had an on and off cough and cold. Last night, he had a fever. They want you to come in to the ER right away if they get a fever so I was there from 4:00 am till 6:30 this morning. They think he is fine, but we'll get results back from the virus tests tomorrow probably.

Survival

Things have been rough over here. Luke has got a cough which is always makes me nervous because of his asthma. Jordan has it too, but it seems to be getting better. And, Brent has just recovered from two days of food poisoning. I start to get that sinking feeling and then am pulled up by those around me. I try not to brag about my kids, but there are times when it is allowed I think. So here are some bright spots in the storm...

The other night when Jordan is coughing and crying and Brent is throwing up (I am at the end of my rope), Tate comes to the rescue, without being asked, by getting Jordan a bottle of water, setting up his Elmo DVD, getting Brent a glass of water and towels and asking me how else he can help.

Last week as Luke knew I was anxious about the scans and chemotherapy, he gave me 75 cents from his money to buy a snack from the vending machine at the hospital.

Sitara has stopped the mystery writing and has received great reports from friends who watched her while we were at the hospital. She looked at the mess in the living room the other night and said, "Hey Mom, don't worry about that mess, I'll clean it up for you in the morning."

Jordan is so sweet. Even when he is feeling yucky, he reaches over in bed and hugs me, spits out his binky and says ummm mah and kisses me.

And our friends...
Pretending their kids aren't sick and bringing my kids to school (without theirs) so I wouldn't insist on driving.

Taking Sitara on her school field trip.

Bringing me coffee from Starbucks

Doing my grocery shopping

And that is just this week. Thank you for sustaining us.

He will feed His flock like a shepherd; He will gather the lambs with His arm, And carry them in His bosom, And gently lead those who are with young. Isaiah 40:11.

10 More Left

Another chemo appointment is finished. I have kind of a love-hate relationship with those all day chemo appointments. They are agonizing but it feels like we're actually doing something. I didn't mention yesterday another thing Dr. Hawkins said. He said that the tumor had shrunk in volume by more than 50%. The diameter had shrunk by 1/3. This is not new since the last scan, just information we had missed out on the first time. So we are trudging along and I'm doing battle with discouragement.

Bad News/Good News

The scans came back yesterday and the tumor was the same size. It was impossible not to be discouraged. I was really thinking it would be different since he has done so well and they were so good last time. However (it's nice to know the right people) I called my friend Kristin and talked with her for awhile. She said she would call Dr. Hawkins and have him stop by today, even though it was not his assignment to be on the inpatient floor. He came by and said the exact things I needed to hear. The first, which I already knew, was that they don't typically do scans this early with most kids. They usually don't do them till week 12 in which case we would be happy with where he is at and wouldn't have known that it shrunk initially and then didn't. Kristin had said there is no pattern to the way these tumor respond, they don't shrink exponentially. The other thing Dr. Hawkins said was that there is no difference long term between kids whose tumors initially shrink partially, completely or not at all. That seems hard to believe, but is the truth and good news since most kids do really well with this treatment. The only news we have left to hear is the integrity of the tumor. Apparently, they can sometimes tell from the scans that even though it hasn't shrank in size, parts of the tumor are dead. We're hoping to find that out. Dr Hawkins said he would get back to us.

Another thing we found out yesterday was that we no longer have to give him shots. They have approved a new medicine that does the same thing, but only has to be given once after each chemo. So, he will get one shot from the nurses in clinic. I'm glad that it is now their responsibility. So that was one bright spot from yesterday.

I know a lot of people read this that we don't speak to often. I thought I would include some info. that may not be clear. Radiation starts the end of February and will go 5-6 weeks 5 days a week. He will get his chemo then too. It will be modified during that time. He will come in for 3 chemo drugs every three weeks. Typically we come in every Friday for one of the drugs and every third Friday for the 3. We'll start back on that schedule after the radiation. His treatment goes until the middle of September no matter how well he responds. We appreciate and enjoy hearing from so many of you. Thanks for encouraging us.